A Natural Approach To Health
Living With Refsum Disease
I had a question the other day about Refsum disease.
Refsum disease is a hereditary disorder of fat metabolism caused by the deficiency of an enzyme that breaks down phytanic acid, a type of fatty acid.
This causes an abnormal accumulation of phytanic acid in blood plasma and body tissues.
Phytanic acid isn’t made in your body; it comes from consuming dairy products, beef, lamb, and some seafood.
Symptoms may include visual impairment, peripheral neuropathy (damage to nerves causing pain, tingling, burning, and other sensations in your extremities), ataxia (disturbances in coordination and motor function), impaired hearing, and bone and skin changes.
Nystagmus (rapid, involuntary back-and-forth eye movements), anosmia (loss of the sense of small), and ichthyosis (dry, rough, scaly skin) may also occur.
Refsum disease usually begins in early childhood, although some people won’t develop symptoms until they’re in their 40’s or 50’s.
The disorder affects both males and females.
In addition to making dietary changes, plasmapheresis (the removal and reinfusion of blood plasma) may be needed periodically to manage Refsum disease.
The prognosis for people with Refsum disease varies.
With treatment, symptoms of peripheral neuropathy and ichthyosis generally disappear.
But, while treatment may prevent further deterioration of vision and hearing, it can’t undo damage to vision and hearing that has already occurred.
To deal with Refsum disease it’s beneficial to:
*Drink 6-8 cups of purified water daily to keep hydrated.
*Strictly limit or avoid consumption of foods containing phytanic acid, including dairy products; beef and lamb; and fatty fish like tuna, cod, and haddock. Your body also converts phytol, found in green leafy vegetables, to phytanic acid, so limiting them may be helpful as well.
*Begin a diet of fresh vegetables (preferably organic and raw) plus nuts, seeds, grains, and other foods high in fiber.
*Include in your diet chlorella, garlic, and pearl barley. Also add kelp to your diet, in the form of giant red kelp or brown kelp.
*Consume “green drinks” daily. The best contain a wide variety of plants and are organic.
*Avoid processed foods, sugar, and soda.
*Be sure to get enough sleep.
*As much as possible avoid stress.
*Get regular moderate exercise.
*Don’t smoke or consume beverages containing alcohol or caffeine.
*Don’t take any recreational drugs.
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